Still looking for answers ... and there are probably none

mimi427August 25, 2005

I took mom to see her doctor on Monday (Geriatrician and Memory Loss/AD doc). Since it's been a year since her last memory test, he did a "mini mental". Last year, her score was 25; this year 18. She is on both Namenda and Aricept - memory meds. He said he was very surprised to see a decline that dramatic. With patients taking both meds, they hope for numbers staying very close to 25 or in some cases, actually going above 25.

I suppose it really wasn't a surprise to me, since she's been living with us this past year and I've seen her decline. On the other hand, my sisters (2) were very surprised and even doubtful that the doctor was right. I wanted to say to them, haven't you been listening to anything I've told you? They spend so little time with her, they really don't see what I see.

The doctor did tell us the meds are not working, so she will continue to be on a steady decline, unless she has some stress, like hospitalization, in which case, she could suddenly plummet to end stage. He wants to keep her on the memory meds, because it is "believed" that these meds could stop agitation and wandering and since they are not harming her physically, we'll keep her on them.

In any case, I'd like to pose a question to you, my friends, which I probably know the answer to. I just thought that even though doctors can give us stats and their opinions based on studies and stats, I'd still be curious to hear anyone's experience with Alzheimer's and the progression of the disease. What I'd like to know is, since my mother declined so much this past year, going from a score of 25 to 18, is this an indication of how her decline will continue to progress? I do realize that she will continue to decline, that is a given, I'm just trying to figure out if it will be a rapid or slow decline. As I said, I think I know the answer to this one knows...everyone goes along this journey at a different pace, but I thought I'd put the question out there and maybe some of you could share your experiences. The toughest thing for me in giving care to my mom is the not knowing; again, knowing she will decline and need more help, but not knowing what to expect next and how long will it be before she reaches end stage, etc.... the not knowing just eats at me...thanks for letting me go on a bit here...I hope everyone is doing okay...Mimi

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Oh, Mimi, this is exactly what happened to my Mother!! Her doctor's numbers are correct, and here's how it was explained to us:

Taking Aricept (which my Mom was on for a few years) sort of 'stalls' the on-set of alzeimers. However, like any medication, the patient seems to build up a tolerance for them and they no longer work as they should. So, instead of a gradual decline like many alzeimers patients have, over several years, our Mothers have experienced a "step-down" in cognition. That is, instead of picturing a gradual sloping hill taking them down towards alzeimers, they've experience deep steps taking them away from us! Drops, as it were. My Mom had almost those exact numbers, in a period of just over 6 months! At our daughter's wedding last September, she was the belle of the ball! She knew everyone, remembered names, joked with them, the whole kit and kaboodle! Now she's in a nursing home and doesn't know where she is, exactly, except that it's a very nice place with nice nurses and good food and fun games, and sometimes she knows who I am, and other days I'm her sister, while others I'm just this nice lady who comes to visit her!

What you'll experience now, is that your Mother will remain as she is for a period of time (perhaps months, could be weeks), then you'll notice another drop in her congnition. Something perhaps like...not remembering where her bedroom is, or wanting breakfast when she just had it a half-hour before....little things that will take you by surprise. Again she'll remain in that state until another drop. However, there will be days when she'll surprise you in other ways, and seem to be her old self again! Those times are few and far between, and my Mom really doesn't have them anymore.....

I hope this helps you and your family. Those numbers are certainly correct (as far as our experience goes), and yes, the sudden decline has occured. Mom's specialists took her off Aricept when that happened: it's affectiveness was diminished. It won't help your Mom anymore...the process, Mimi, has begun. It took Mom about 6 months from that first to decline from 18 to number 11. I'm sure it varies with individuals, but both our Moms have experienced the Aricept affect, so I'm guessing that within 6 months to a year, your Mom may not be able to look after herself at all. So sorry...but I was in your boat, and you're right: the not knowing was the worst part.

Wish I had better news for's heart-breaking how this insidious disease takes our loved ones away from us. Just heart-breaking. Enjoy these next months with your Mom and give her all the comfort and hugs you and your family can. They're frightened of the changes, too...provide the security they need.

If you need to chat about this, please don't hesitate to email me....I don't come on here as often, but wouldn't you know it, this morning this has been my first stop and there was your post. Mysterious ways, indeed.


    Bookmark   August 25, 2005 at 10:54AM
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Every case seems to be a little different. But, generally speaking, Lindi has painted an accurate picture. A lot will depend on the individual's personality as it progresses. A docile,peaceful person will decline and you won't really be bothered with it. The stubborn independent patient will most likely become unmanageable for a while. It can takes weeks, months or years. And there are always things like stroke, heart attacks or infections that can hurry things along.

    Bookmark   August 25, 2005 at 11:43AM
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Ah, true enough, LogFrog: my Mom also had a series of TIAs which likely exaccerbated her condition. And yes, she was an independent, TypeA person and it was hard for her to acknowlege that she couldn't do the things she was so accustomed to doing.

But yes...there will be a noticeable progression from now on...sorry to say...

    Bookmark   August 25, 2005 at 1:47PM
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Lindi - no need to apologize...I don't want it sugar coated..I need to know what I'm up against...this not knowing is driving me mom too, unfortunately was very independent, stubborn, argumentative. I can see already how tough this has been on her to accept.
Her doctor wants to keep her on the Aricept and the Namenda because "they believe" that the meds can help manage combativeness and agitation. Since we don't know if they actually are working to manage it, or if she just doesn't have those symptoms, we will continue the meds. They have not affected her health and she's on a drug assistance program so they are inexpensive.

    Bookmark   August 25, 2005 at 5:53PM
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Yes, I can see his point. Mom was passive, just irritated at times when she couldn't do what she knew she could do earlier. I wasn't aware that Aricept helped that. Glad they're not Canada it's all free, but I guess that could certainly be a consideration for many folks.
Hope I helped a bit....;-)

    Bookmark   August 25, 2005 at 9:41PM
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Hi Lindi,
Actually, they don't know for sure if Aricept or Namenda actually help stop combativeness and agitation, it is something "they believe".... he explained it to me this way... he said he believes that by whistling all the time, he can keep the pink elephants don't see any pink elephants, so, therefore, it must work.
Yes, Linda, you really helped alot and so did PeaBee. Maybe it's the stubborness in me, it's just so hard for me to sit back and just wait. Part of the frustration is there's nothing I can do; I can't "fix" her. Yes, I can love her and tenderly care for her and help her to feel safe, but I can't stop what is happening to her, and I don't know what will be. I know she will continue to decline, but how long will that take? At what point will I no longer be able to care for her? No one can answer these questions. I just thought since the doctor now knows how much she's declined in one year, he may have an idea what her rate of decline will be like next year. All he can say is that we know the memory meds are no longer slowing down the progression and that she will continue to decline. I was just hoping I could hear more.
Thank you both,

    Bookmark   August 25, 2005 at 10:35PM
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Mimi dear. we wish that we could ease your mind by giving you some sort of time frame. But that's not going to happen. There was a woman that came here about the time her mother reached a point where she couldn't live by herself. She went so fast that we wondered if she really had AD. It was just a few months. It seems to depend on which area of the brain shut down first. Perhaps this will be the same for your mother. I think it's easier if you don't try to fight it. You can't make it better.

    Bookmark   August 26, 2005 at 8:33AM
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Mimi, I re-read my last post. It sounded rather blunt. I didn't mean it that way. You see, one of the problems with giving drugs like Aricept, is that the families do not have a chance to get used to the change gradually. It's WHAM, and there's that big drop when it stops working well. Then, it's much harder to accept the big change. You'll manage. But you can only do that if you put yourself and your needs first. Take care of yourself or you can't do what's best for her.

    Bookmark   August 26, 2005 at 8:41AM
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I know whatever advice you give me is from your heart. You have so much wisdom and I'm sure most of it is unfortunately from experience. I understand what you are saying. I think it's just my personality to "fight it", try to "fix it"...but I realize that this I cannot fight or fix.
Even on the meds, I've watched mom decline over the past ten months, but I understand what you are saying, the meds slowed down the progression, so now that they are no longer working there is a sudden drop.
I do understand the importance of taking care of me, I'm just not sure how to do it. I have very little free time. Mom's aide is here with mom while I'm working a full time job for an extremely busy physician. When the aide leaves, I take over spending time with mom. I do have a few hours on Sundays when my sisters pick up my mom. I can't get them to help out any more than that. I am seeing a therapist for depression because I cannot shake it on my own. I've given up on exercise and I know how important that is to my well being...I've been an exercise nut for over 30 years and now I can't get myself to even take a walk. I also have two herniated disks in my back which for the most part don't cause too much pain, but I do have sciatica from them, and I have NO plans to do anything surgically about it...just hoping they eventually shift and relieve the pressure on the nerve. Yes, I'm a mess, but I'm not prepared to send mom to a nursing home....not yet. I do have an appt next week to view the facilities of a highly recommended one and will get her name on their waiting list...back to work now....thanks again,

    Bookmark   August 26, 2005 at 11:12AM
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Mimi, you sound so much like I was. So anxious to know "when" and "how". It's natural, I think. As PeaBea said, with Aricept, our Moms have experienced a dramatic drop in cognition in such a short time. It really is difficult to grasp it all.

You have some assistance while you're away, and you have a few hours free on Sunday. Doesn't really leave much time for you, does it? What time does your Mother get into bed at night? Sweetie, I'm on Celexa, and have been for 2 years now, as my blood-pressure has sky-rocketed with caring for her...also on BP med, too. The Celexa makes me so much less anxious...I seemed to be wearing my nerves on the outside of my skin before, but now they're well hidden. I recommend it! ;-)

As for the nursing home....this was THE most difficult thing I've ever had to do in my life! I had always promised her I'd never do such a thing....apparently many of us do that that the guilt is tremendous when we have to make that decision. Mom went into the nursing home here because I could no longer lift her into bed, and I could no longer leave the house at all, as she was incontinent (both). I had to help her clean herself up in the washroom each time, and even in the night, I had one ear open and went downstairs to help her when she got up. I wasn't getting sleep and even tho' my DH said he could fill in for me to leave anytime, how could I do that to him? We had to have our time, too, as we're retired and wanting to spend whatever time we have left together.

Mimi....I WISH I had done that sooner!! It wasn't easy and I cried so much over the couple weeks before and after she was gone, that I truly had no tears left. BUT when I see her now, even with her alzeimers, playing the 'parachute' game, or playing kick-ball, interacting as much as she can with others, and smiling and getting hugs from the staff, I SO wish she could have been there when she could dance with others when the bands come and play, that she still could have played her killer game of gin-rummy or cribbage...but it's too late for that now. that those mundane, everyday, sometimes irritating things are being done for her by others, my visits with her have become so much more tender...and loving...I'm not fighting to get her to release a wad of dirty toilet paper she's trying to put in her pocket, nor am I frustrated and edgy from lack of sleep. Now, I bring her treats, her stuffed toys, take her for nice walks through the gardens there...we sit in the gazebo and nibble chips or ice-cream...What a miraculous difference it's made! AND I know she's well cared-for, is out of harm's way, is clean, and well fed.

No easy answers, like PeaBea certainly does depend which area(s) of her brain has been affected. It's good that you are looking at a nursing home...she may disagree about being placed there, but she's becoming your child now. You have to make the best decisions for her AND for you.


    Bookmark   August 27, 2005 at 2:59PM
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Dear Linda,
Thanks so much for taking the time to write to me. I understand everything you are trying to tell me. I have been in therapy for the past few months, and I am coming to terms with realizing that I will have to place my mom probably sooner rather than later. I do have an appointment next week to view a facility that has been highly recommended by the social worker that works with mom's geriatrician - they are part of a team of doctors that work at a well known local hospital and specialize in Alzheimer's and memory loss. I have had several visits with the social worker as well, and she is very familiar with my mom's past. I believe I have mentioned that my mom is a holocaust survivor. The facility they have recommended is heavily populated with people of the Jewish faith and in fact, they have several holocaust survivors living there. I am hopeful that this will be the right place for mom.
As far as having her go there sooner rather than mom has NEVER been a social person. She's always had a few close friends, but she's not one to really socialize. She lived in an assisted living facility that had a wonderful program with daily activities. They have an indoor heated swimming pool, and exercise room, card room, arts and crafts room and a beautiful lobby where people would gather just to sit and talk. Speakers were brought in and gave lectures, bands were brought in and they'd have dances...there were holiday name it. I often thought I wouldn't mind living there myself! My mom lived there for 14 years and hardly took advantage of any of the activities. She did exercise three days a week in the exercise room, but she'd go before breakfast when no one else was working out. They had their own van that would take them shopping, or to the doctor, or to plays, or to the gambling boats. The ONLY thing she'd do is go to the gambling boats, which was one afternoon, once a month.
Mom was 41 when my dad died; I was 13 and my sisters were 16 and 18. From the time dad died, we took over caring for her. She got a job and worked full time and we were expected to care for the house, grocery shop and prepare dinner. As we moved out of the house, we continued to take care of her, taking her to the doctor (she never drove), grocery shopping and errand running. When she moved into the assisted living, we all thought this is great! She'll be well cared for and can take advantage of all the services they offer, but she refused...she wanted her daughters there to care for her. Linda, it hasn't changed..she still only wants her daughters to care for her. Yes, she allows her aide to help her, but if I'm around, she'll ask me first. I guess what I'm trying to say is (and I'm sorry this is SO long) after all she has been through, and the way she's lived her life, she would not be happy in a NH at this point. She still knows who I am and my husband and even when my son calls, she asks about my DIL and grandson, sometimes even by name. If she were to go there now, she would NOT socialize; she'd stay in her room watching TV, and probably feel as if she's been desserted. Let's face it, we all have to be able to sleep at night and at this point, placing her now, I couldn't sleep. I'm going to need to wait until she declines some more. In the meantime, I will continue to care for her and love her and hug her and hope that I can physically and emotionally hold out. I don't mean to sound like a martyr, I'm a pretty tough bird...I think I can do this for a while longer.
Thanks again...I hope you're enjoying your free time, you certainly earned/deserve it...

    Bookmark   August 27, 2005 at 11:05PM
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One of the things that a well run nursing home does is to see to it that the patients get out of their rooms into the common meeting areas. They don't want them to just sit by themselves. It's part of their program. Even though your mother is not one that likes to socialize, she would profit by just being in an area where she can watch other people. Even if she didn't join in the conversations, she would hear and her thoughts would then include other people. GOOD nursing homes are not the worse place to be. Sitting alone may be worse for the elderly. We really don't know.

    Bookmark   August 28, 2005 at 1:59PM
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As always, I appreciate your comments. I have NO experience whatsoever with NHs. One of my sisters is an RN and when I brought up the idea of starting to look for a NH, she said there are NO good ones; they are all understaffed and the patients are neglected. She also said that when people go into NHs, they ALL experience a major decline in function (I know this is her opinion). On the other hand, my other sister is still in denial. In her world, mom's not all that bad (I'd like to suggest to her to have mom live with her the next ten months and see if she snaps out of it). So, I am dealing with family members that are VERY resistant to the idea of a NH. I am mom's POA, so I really don't need to listen to anything they say, but that is easier said than done sometimes. I still plan on visiting the NH next week and I'm hoping for the very best.

    Bookmark   August 28, 2005 at 4:55PM
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The Family can be a problem, that's for sure. One thing you can look for is how the NH groups the patients. The first one that my mother was in looked like just the perfect place with lots of activities for the ones that could get around. Then, as I was being shown around, we passed a wing and my guide said, "that's where we keep the sickies." It was obvious from her attitude and the stench that they neglected them.

    Bookmark   August 28, 2005 at 5:26PM
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Dear Mimi, Haven't been on for was 2 months Aug.26th and I so miss my sweet Mom. I like you at the beginning of the decline had so many questions...went thur the...what can I thing from the beginning was that I wanted to be informed and know what was ahead. One wonderful book....from the alz. association...called the "36 hour day" helped me. I couldn't sit down and read it for very long at a time...and yes each person is different...but it does answer alot of questions. Mom also stayed on her painful as the journey see the decline....for me the stress came...I knew that for me to take care of her and Dad I had to take care of doctor finally said you have to have something....he put me on zoloft....all I can say is that it took the edge off...I also went thur my sister keeping her head in the sand as I would like to explain how she dealed with it....she lives an hour away...and 7 years older....the one good advice my DH gave me...he had to say it over and over can't make other people see or understand the way you do.....after many ups and downs...I finally....with the Lord's help....knew that this was my journey with Mom and with His strength and just taking it one day at a time that together we would do the best we could to make her happy,loved and to care for her needs the best I could....sure things got crazy...I could write a book....but I knew that with prayer and seeking His day at a time.....I could do it....coming here to and just someone to you the strength to carry on. As I look back on the journey of 9 years with my Dear Mom I only remember the wonderful times of her laugh,her smile,the times we danced,the times we would just swing and I would hold her hand..all the good memories...and I remember those eyes...she would look at me...not knowing that I was her child...but...those eyes would say..."I love You"....God was faithful and I was with Mom when she took her last my pastor told me...and she was with you when you took your first....58 years Mom and I took our journey together!!! I pray that He will give you is so very hard to see them leave us. God Bless, Nora

    Bookmark   August 28, 2005 at 7:06PM
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Dearest Nora,
My condolences once again on the loss of your dear mother. Thanks so much for sharing your experiences; I so appreciate it.
I do have the book "The 36 Hour Day" and I've read portions of it...I will have to pick it up once again.
I have been on Prozac for some time now, and started Atavan a few month's back. I also take something for sleep, and I'm still like this...can you believe it?
Sometimes, it just takes me some time to get something through my head. I think I fight it at first, and then come to realize that some things you cannot fight. I have to come to terms with this disease. I know it's terminal and I know there is nothing that I can do to stop it. What I have to get through my head is that NO ONE knows what mom's journey will long will she be able to live with me, how long will I be able to care for her...I just need to get that to sink in.
Blessings to you Nora, your mother was a very lucky woman to have you as her daughter...Mimi

    Bookmark   August 28, 2005 at 8:49PM
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Dementia is maybe the most painful thing that any of us have do go through.

pain? Pain can be endured, treated, heating pads, ice packs, drugs- there are things to DO about pain.

mobility? again, accomodations can be made. houses rearranged. furniture moved.

one of the worst three days of my life was visiting my father, and him grousing about being stuck in bed, he wanted to go to the beach with the rest of us...and the slow dawning that dad wasn't in the hosptial, he was in the old house in Wildwood, and I wasn't his daughter- I had become his sister, who died when I was only 3.

and god help me, all I could do was tease him for eating too much cake at the movies the day before, and promise him that I would bring him any good shells that I found, tuck him in, and let him drift back off to sleep. my husband found me on the floor next to the (thankfully empty) bed sobbing like a child.

two days later, he was fine, no memory at all of the incident (they'd given him his first dialysis treatment- and it worked so well they didn't need to do a second one)

where our parents feel frustration- we must look on in something that I can't tell from the horror of being the first person at an accident scene.

where out parents feel confused- we know something closer and closer to dispair.

I survived dad's last 6 months because I had to- my little brother took my mom out to lunch a few times, but his sense of family obligation ended there. It was an ordeal (in the sense that a 7 day fast, or a vision quest, or other spiritual trial) instead of a trauma largely because my friends helped keep me focused on what mattered, and the three RN's in my life helped me weed my way though the mounds and mounds of nonsense that comes with modern medical care.

friends did my laundry, fed my cats, sent fruit baskets to the nursing team of whatever ward he was on, sat with dad so I could take some time, sat with my mom, made up excuses why we needed to move every social event this summer to my parent's house (vacuumed the pool, swept the leaves off the roof, and pulled the weeds while we were there)

and provided me with an almost non-stop flow of back rubs, partner stretches, and hugs.

I too had to give up most of my exercise- it's hard to manage that nice, relaxing 4-mile bike to work when you know you need to leave directly from work to drive the 30 miles to the hospital, and the 4-mile ride back to pick up your car would leave you facing rush hour traffic...

but I was on the bike the day the rehab we were just getting used to called to tell me they'd sent my father to the hospital and the outlook was grim- and let me tell you, where I would almost certainly have wrecked my poor little wagon had I tried to drive home- the 15 minutes it took me to bike back to meet my mom made all the difference in the world, and I walked in to ICU ready to be the child my parents raised. the strong one. the loving one. the brave one.

andit sounds like that's the role you have taken on, since your siblings can't seem to spare more than a few hours here and there (my brother changed his phone number rather than even attempt to make excuses)

there is no good way to prepare...but there is some comfort in knowing that you chose to endure what most cannot. though it's not until afterwards that I realized that no, most people really can't deal. at all. and they lose one of the most profound chapters of human existance.

may you both have as comfortable a time as you can :)

    Bookmark   August 29, 2005 at 12:21PM
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My dad has experienced a couple of rapid declines, both during times of high stress (my mother's death and his emergency surgery). He remains on Aricept and Namenda with the thought that they may still be slowing the decline. He has good days and bad days. I don't know what his most recent scores are, but if he took them on a bad day the score would be really bad. There's absolutely no way to know how quickly your mother's Alzheimer's will progress. I see my father several times a month, and I never know what I'm going to get when I arrive. So far, he has never forgotten who I am (although it's been two or three years since he said my name). And he's fighting so hard not to decline any further.

My father was in a nursing home for a few weeks after his colon surgery Christmas Eve. My brother summed the place up with "it's where they send Medicaid patients to die." when he was released from needing actual nursing care, we found him an assisted living facility. He's holding his own for the moment. They feed him, give him his meds, do his laundry, clean his room, etc. When the time comes, they have a Dementia Ward for end-stage patients.

Daddy hates it. He doesn't understand why he can no longer live at his house by himself, or why he can't live with me. I work full time, so I'm gone at least 10 hours a day by the time I've dropped the kids off at their different schools. Since he can't prepare or get his own meals, that won't work. He will eat if you put food in front of him, but gets so frustrated trying to make a sandwich or trying to find one that I've already prepared that he doesn't try. He tries to take his meds, but forgets about half the time. Daddy spends about a weekend a month at our house. While he's there, I have very little time with my daughters (2 and 5). My husband has been very patient and understanding. I wish there was a way for everyone to win. Alas! It's not a good situation for any of us.

Mimi, my one gem of advice for you is that you need to visit any place your mom might live more than once, both announced and unannounced. It's hard to get an idea of how a place really is on the one well-prepared little tour. We also took my father to a few places over a year before he actually moved out of his house to see where he felt the most comfortable. Check things like staff turnover. Eat a couple of meals there. I'm glad you've started the process. Now you can take the time to make an informed decision instead of being rushed because of an emergency. I know that as a dutiful and loving daughter, it's an incredibly hard step to take. Waiting won't make it easier.

Of course your siblings are very resistant to a NH! They have the best of both worlds. Your mother is living with a daughter so they have no guilt, and she's not living with them! One problem now is that you only get a break for a few hours a week (outside of work). My father-in-law and his sister did a kind of joint custody arrangement with their mother. He had her for holidays and summers, and his sister had her the rest of the time. That way, they both got a chance to rest and recuperate. It sounds like you've reached a point where something's got to give, however willing you may be to toil on.

    Bookmark   September 14, 2005 at 3:11PM
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